Advancing the Science

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November 27, 2019

Pediatric Advisory Board gives kids a voice in research that affects them

By Advancing the Science contributor
13 members of the pediatric advisory board pose for a photo outside the Mayo Clinic Building in Rochester MN
Members of the Mayo Clinic Pediatric Advisory Board, 2019

Megan Allyse, Ph.D., is no stranger to speaking to a crowd. Dr. Allyse, a biomedical ethics researcher at Mayo Clinic, teaches medical students and makes frequent presentations to community groups. But recently she spoke to an audience she rarely encounters: a group made up entirely of people under 18. "The youngest was 11," Dr. Allyse says. "He had so much to say."

Dr. Allyse was presenting to Mayo Clinic's Pediatric Advisory Board, a group of young people who have volunteered to help shape the research that affects them. "We want to get feedback from kids about how to conduct research, how to recruit participants and how to communicate research findings," Miguel Valdez Soto, coordinator of the board, tells us. "We think it's important to give voice to the primary people who receive the service — in this case, kids."

Dr. Allyse agrees. "If we're going to do research with human subjects we should also get feedback from them about the kind of research we should do," she says. "We do lots of research on children. It would be great if we could do more research with children. Just because people can't legally give consent doesn't mean they don't have important viewpoints and perspectives to offer."

Mayo Clinic has a number of community-based advisory boards and councils. But the Pediatric Advisory Board marks the first time Mayo has solicited input from kids. It's a unique move, according to Valdez Soto. "When we decided to set the board up, I looked for resources on how to put it together but couldn't find any other institutions with a similar pediatric or youth advisory board," he says. So he and his colleagues created a format and got to work recruiting members. They held their first meeting in 2018 and have met quarterly ever since.

Two members of the Pediatric Advisory Board talk and laugh with a researcher. Advisory Board coordinator, Miguel Valdez Soto, looks on.

Though the board is in its infancy, early reviews are positive from both sides of the presenter's table. "The researchers love it because the kids are really honest," Valdez Soto says. "They give great feedback. At our last meeting, the researcher decided to change his recruitment materials based on feedback from the kids."

The kids love it, too. It "means a lot to have a say in causes that affect children," Jade Holt, a member of the board, tells us. "A lot of people my age aren't willing to or don't get to share their thoughts on the matters that the people on the board get to talk about. The board brings the things we learn in science class to the real world. I love seeing all the different experiments and different parts of the scientific process."

Having people like Jade ready and willing to offer feedback is an incredible resource, Dr. Allyse tells us. And one she hopes more of her colleagues will make use of. "The best case scenario would be that there are so many people who want to consult with this board that there's a waiting list to present," Dr. Allyse says. "These kids are giving up their evenings and their parents are shuttling them to Mayo. It's a sacrifice they're making to help us. We should take advantage of the resource."

The Pediatric Advisory Board is an initiative of the Mayo Clinic Center for Clinical and Translational Science.  This program is supported by Grant Number UL1 TR002377 from the National Center for Advancing Translational Sciences (NCATS).

This article originally appeared on Mayo Clinic's In the Loop blog.

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Tags: Center for Clinical and Translational Science, community engagement, Innovations, Megan Allyse, Miguel Valdez Soto, Pediatric Advisory Board, People

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